Guest guest Posted February 23, 2010 Report Share Posted February 23, 2010 Hi, I have been to three different hospitals in the last year and half and still have yet to get my spine imaged despite dragging my leg. I guess for me I had to accept that It was out of my control and the best thing i could do while waiting for ignorance to catch up was to stay as informed as possible and work on spreading awwareness. Otherwise my frustration towards the medical comunity would have exploded into consuming anger. shannon To: Neurosarcoidosis Sent: Mon, February 22, 2010 3:56:42 PMSubject: just checking in.. I have missed you all. Currently, I am dealing with a bit of a flare up. Get this....while I'm discussing current problems with the doc, he tells me he is writing a paper on me and my fight to get a correct diagnosis, etc. (I sought treatment at 5 diffe4rent hospitals before anyone found the NS lesions in my brainstem and spinal cord....even though I have had sarcoid in my eyes, and interdermally) . He wanted to know what I thought, etc, and I told him GREAT! Now maybe the next person won't have to go through all the % & ^(*^ we have. I told him about the support group, and how common it is for us (NS sufferers), to go for years without a correct diagnosis; in the meanwhile, the nerve damage just continues to worsen. He seemed surprised to hear that misdiagnosis was so rampant; I guess he thought I was a rare case. Does anyone else have any comments/horror stories to share?SHanniemel (AT) yahoo (DOT) com Quote Link to comment Share on other sites More sharing options...
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